Hi guys Thank you, I have benefited a lot by your shared experiences.
I was diagnosed with stage
3 breast cancer in 2013, right breast.Had mastectomy, lymph nodes removal, and radiation but declined Letrozol. In 2015 left breast was discovered infected, Had another mastectomy, but
again declined Letrozol. Finally, Jan. 2018, diagnosed with stage four, Lung lining involved,
pleural effusion, diagnosis refined by Pet scan to include center of chest lymph infection. I am just starting Letrozol, finally, day three, and apprehensive about quality of life with side effects.
I am desperately looking for alternative cures, these are some under consideration:
Carnivora (from venus flytrap plant, supposedly given to Ronald Reagan for colon cancer?); Simpson oil - cannabis based CBD & THC; cottage cheese and flaxseed oil;
graviola (plant extract); among others. I like alternative cures idea, because they are
less harsh , less side effects, and since they can't be patented or profitable are unproven whether they work or not, which gives them a mystique and me some space of hope. Any of your ladies know about these possi bilities ?
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Arkait
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Alternative therapies are less harsh re side effects but that’s probably because they don’t work...letrazole has worked for some ladies on here for many years..even a decade or more
I take it and hate the side effects but will tolerate these if it extends my life for a bit longer..I assume you’re oestrogen positive?
Hi Barb, Yes negative Her2, Er positive. newly involved lung and mid chest lymph, now,
diagnosed in 2013 stage III, had surgery and radiation only. Enjoyed five years, but
no longer out of the woods. Thanks for advice. I think alternative cures are like
placebo, cause a lot of hope, and therefore might help in that respect, perhaps.
Hi Arkait,
I have not heard of these treatments, apart from some women who sometimes use CBD oil to manage their pain. I would suggest you post your question in the "Ask a metastatic expert anything" post that was put up two days ago. Then when the question and answer discussion takes place tomorrow the doctor can weigh in on these options and let you know his thoughts and offer his professional opinion.
You're welcome! There is so much out there that it can be hard to make a decision on which conventional treatments, complementary therapies or alternative treatments to go for. But I really feel that the doctor I mentioned last night can be of help.
I started taking letrozol on January 6th I don't have any side effects yet. I never had any with arimadex either . I have been lucky I guess but I do think we all should not assume we will have side affects just because someone else did.
I agree with you. We do not all get the same side effects, and some of us cope very well during treatment. Even our doctors cannot always predict how well we will do with certain medications. When I first started hormone therapy, my oncologist asked me if I had experienced any hot flushes yet. When I said no, she responded with "You will". As if right on cue, I had a hot flush a few days later, followed by a few night sweats and that was it. This was last June! So oncologists can look at how other patients have responded in the past, but that does not mean we will all conform to that.
Dear girlsptz, Not to be misunderstood I am taking Letrozol, now that I have become Stage IV. But I continue to hope some alternative I might try will help, as well.
You're welcome. I am on Letrozole, Zoladex and Zometa, but not on Ibrance. It seems that Ibrance is offered to some women who are ER+, but it was not offered to me and I am doing well with my current treatment. I think it just depends on each patient. I would talk to your oncologist with any concerns you may have.
DEAREST ARKAIT! Please consider the letrozole/ibrance combo. If you are hormone receptive, this is the first line of combat against our situation. My heart goes out to you, just reading your story. I do not trust alternative meds when you are Stage IV. God bless you, sister fighter!! XXOO Linda in Seattle
Hello, Arkait! Has there been any discussion of introducing Ibrance? Letrozole is often described as more effective in combination with Ibrance. Many prayers that your pain has diminished! XXOO Linda
Hi,, Linda.......Yeah, I didn't want Ibrance, yet. Hoping Letrozol alone might work. Probably stupid of me. I was offered to be part of a study of women over
80 who had never taken Letrozol, and would be started on Letrozol and Ibrance, but the side effects listed for Ibrance was daunting, so I didn't
pursue it. Might regret it. We'll see what Letrozol can do. I also started an
alternative supplement called Carnivora....no idea if that can do anything,
but at least there are no side effects.
Meanewhile, catheter (pleurex) is still very bothersome trying to sleep,
nights. But OK during day, at least (somewhat). Nice to talk with you.
Dear Seattle Mom, or to anyone with pleural effusion in lung lining. I had a catheter
put in yesterday to drain off the fluid that is accumulating in my lower right lung.
I have cancer on the lung , †here. Does anybody else have this condition (fluid builds
up and makes it hard to breathe, so it has to be drained. )I had a permanent catheter
put in yesterday, but it was excruciatiatingly painful (I was conscious on 50, then 100, then
150 levaquin which didn't work. I had to wait 3 hours and 15 minutes to convince hospital
I needed morphine the pain was so bad (breathing fel† like knife jabs). Even today, 2 days
afterwards I am extremely uncomfortable from it,and cannot lie down freely,except to avoid the area. Has anybody else here had a lung drain catheter inserted, and had this
kind of reaction. The surgeon who inserted it seems surprised at my distress. Said it
was not common. I dont know what to expect, and how well I am going to tolerate it long
My pluerx drain was very uncomfortable in the beginning. I was told they usually are not. It took a while on advil before it became more comfortable. Mine was right under my right breast and on it felt like it was right on my rib. What helped me was how the tube was sitting on my chest. When it was up high on the rib I had so much more pain. When I placed the tube with the cap lower and pointing towards my back. It made a world of difference. This happened a few times until I know exactly where to place the coiled tube. I hope you get some relief soon.
I have zero complaints with letrosol. I do take it at night before bed, and I do notice a hot flash within about 30 minutes of taking it but that’s it. I am 69 years old next week so I’ve been in menopause for many many years and I have several degenerative bone issues which are not tremendously uncommon for my age. I think we tend to blame everything on cancer And cancer medications, when some of it has nothing to do with cancer at all or just our bodies, or other issues and our age. When I took letrozole 15 years ago I had flashes to drive me crazy. I’m considering taking in the morning instead of at night but I haven’t done that As yet
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New to group 
No Blood Markers…
Hi - I'm new here
Breast cancer
New diagnosis of metastasised breast cancer in lung. 
